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Tuesday, October 4, 2011

From Where I Sit: Life Goals

by
Jamie

Good Morning Friends. I'm so glad to see that you enjoyed the first installment of From Where I Sit. You certainly gave some thought provoking feedback, which I really appreciate. Our bedroom chat certainly seemed to be a hot topic and come to find out, on many people's mind. If you missed the conversation and want all the juicy details, feel free to get caught up here and join in with your thoughts.

One of the things I was glad to see with the first piece, was the new questions that came out of it; this time on life goals.

This question was posed to me by Ruth, who through the powers of the Internet, I have had the pleasure of getting to know quite well, and I just adore her. If you haven't already, you need to take a trip to her blog and say hello! I am going to be answering this one in two different blog posts because there is just so much to cover.

Q. "Did you ever feel like your disability might prevent you from having a job and getting married and all those kinds of life goals?"

A. I'm going to focus on the first part of this question. . .if I ever felt my disability would prevent me from having a job/attaining life goals.

You know, I can honestly say that not once did I ever believe that my being in a wheelchair would prevent me from being able to work.

My entire life I have spent in a wheelchair. I know no different. I think my inner strength and determination comes from my family. I was never treated differently by any of them. I knew I was "different", they knew I was "different" however it was never EVER a consideration when it came to wanting to achieve different things.

I used this picture for a reason. We all will have many stairs in our life that we need to hypothetically climb to attain our goals. Although my disability was not dwelled on in my family, we were all very realistic that in some cases, those stairs that inevitably needed to be climbed to reach my desired goal might have to have an elevator to bring me to that next level. What I mean by that is sometimes I needed to be creative to reach the same goal as my peers because for me there were certain obstacles I needed to hurdle.

Here's an example for you. In 1996 I graduated with honors from high school. I had a four year scholarship to any university in the state of FL. Academically, I easily matched or exceeded expectations. I wanted the same experience of going away to college that all of my friends were going to have. There was one problem: I need help with things such as transferring in and out of bed, dressing and transferring in the bathroom. I need help at different times throughout the day, but I don't need a 24-hour nurse or caregiver.

Those needs posed quite an issue. I had the grades to get into any university I wanted, but how would I live away from home? I settled with living at home and going to a local community college for the first two years. What would I do from there? There were no four-year universities close to my parents’ home and I wanted that away from home experience.

During those two years, I called every home health agency and insurance company I could find, and followed up on every ad on the Internet for caregivers. Just when it seemed like a door of opportunity was opening, in the blink of an eye, it closed again. I became so frustrated that I decided I would call the then governor of our state. Surely, he could lead me in the right direction.

After making what seemed to be a million phone calls, I finally had him on the phone talking to me. I described my situation and, after a long pause he responded, “Well, typically, people in wheelchairs are not smart enough to go to college, so we don't worry about them. Sorry, I can't be of more help."

Not smart enough to go to college? I was in the top of my high school class and had made dean's list every semester in my first two years of college. You’d better believe I’m smart enough!

I had come to the conclusion that unless my family became independently wealthy or was willing to uproot their lives to move closer to a four year university, I was only going to be able to get a two-year degree, which was unacceptable to me. In a moment of frustration, I broke down in tears at school. I was outside the Humanities building, trying not to let too many people see that I was “losing it.”

A friend of mine walked by and noticed I was crying. She came over to find out what was wrong. As I described the roadblocks I kept running into; she asked what my needs were. I told her that I needed help getting up in the morning, dressing, using the restroom throughout the day, showering and then going back to bed at night. "Jamie, I can do that for you!"

Was I hearing her correctly? In an instant the clouds seemed to part and the sun's rays beamed down to reveal the answer I’d been looking for. How could I be sure that this would work? We decided that in the next few weeks she would come to my home and learn what all was entailed in my care.

I remember my mother teaching her how to properly lift me. When it came time for her to lift, I panicked inside. If she wasn’t able to lift me our plan would be foiled. I prayed fervently that my 95lb body would not be too heavy for her. She put her one arm under my legs and the other behind my back, “Are you ready?” I nodded in anticipation, closed my eyes and held my breath as she cautiously, slowly lifted me from my wheelchair and sat me back down. I was ecstatic that she was able to lift me and positive that she could handle everything that encompassed taking care of me. . .after all she was at least 10 years older than I was. Her maturity level would surely lend itself in our favor of making this work.

One lift however does not a caregiver make. I was scheduled in the next few weeks to spend a few days at an assisted living facility by myself to prove to Vocational Rehabilitation, the organization that would be paying for my special needs equipment (elevating bed, reacher, shower chair) at college as well covering the room and boarding of my caregiver; that I was fully capable of living on my own. We decided at that point that she would join me for the few days at the assisted living facility and fully see what it was like to take care of me from morning to night. I just prayed she was up for the job.

As you can see, she was my "elevator" taking me up to the next level in my life goals to get a four year degree. Unfortunately she didn't work out. After only a few months my world again came crashing down because of her instability, but that is a story for another blog post.

In life I have always known I would have to prove myself. There are a lot of stereotypes and pre-judgements when a person sees someone with a disability. I think that has been the biggest challenge in my life truly. Proving to people that I am just as capable as everyone else. I have been blessed with being able to hurdle those obstacles, often times as if they weren't even there.

So thank you to my family who always believed that I could make my dreams come true. To teaching me that my disability was not a hindrance, but a blessing. To instilling in me a faith that reminds me each day that when the world says no, God say YES!

I think that is the biggest life lesson for anyone. Believing that you are worth it. Believing that there is a way. And believing with enough drive and determination, anything is possible!!!

6 comments:

Wow, that is quite a story! I'm amazed that the Governor could be so shockingly prejudiced. I bet if more resources were in place for students who use wheelchairs, he'd be very surprised at how many were going to college. I'm impressed by how much work and effort you put into achieving that goal.

Ya, the ordeal was quite frustrating, but I wasn't going to rest not having an opportunity that was rightfully earned! As for the Governor. . .some people are so closed minded and ignorant you wonder how they make it through their day to day life.

How do you feel about portrayals of handicapped people in popular culture like Joe Swanson on Family Guy or Timmy on South Park? I have to admit I find it funny when Coach Sylvester refers to Artie as a cripple on Glee. I almost peed myself laughing when Steven Hawking was having wheelchair sex with his wife on that episode of Family Guy where Brian went back to college. Some people have said it was un-PC but I think we take ourselves too seriously these days and need to lighten up. What are your thoughts?